The Morning After the Night Before... (WARNING: SOME ICKY CONTENT)

Back to the Royal Free, November 2015...

The day after my first night of methyl-prednisolone was not the best I've ever had! Thankfully, there were signs of improvement given my condition the day before. I was apparently less yellow and was starting to feel a bit more energetic again. I even managed to get out of bed and move around again. 

At some point over the previous days, my catheter had been removed. Since then, myself and the nurses had noticed blood in my urine. No one was overly concerned about this until I noticed a very large bruise in my groin. When I say a bruise, I mean a lump close to the size of a tennis ball the whole area was purple. It was not a pretty sight and was rather uncomfortable. I informed the doctors and yet another ultrasound was requested to make sure that this was nothing sinister. Thankfully, the ultrasound showed nothing nasty going on and it was concluded that it was just a really nasty bruise probably caused by the catheter or removal of the catheter. This delightful bruise to a good couple of months to subside - oh the joys of not having a normal platelet count!

Luckily, my day was improved greatly by the visitors that came... 

With Abi on the day of yellow!

Abi was there for the second day. It was so good to see her and also to see her when I looked a little bit more normal (although having spoken to her since, she felt I looked even more yellow!). At least I as able to sit up and get out of bed this time. I was so grateful to Abi for being there and it reminded me what true friendship is. She had come down from York during the middle of her studies as a midwife to come and visit to make sure that I was OK. It meant the absolute world to me that someone would go to that much effort to come and see me when I was most certainly not at my best, especially as visiting was limited to after 2pm, meaning that she had to find ways to entertain herself before coming into the hospital. It turns out that Caius had some very important business to attend to that he needed Abi's help with...

One thing about being in hospital is that it is difficult to be completely presentable and so you need the people around you to be those that you are completely comfortable with. Luckily Abi is certainly one of those people and she didn't mind that I might dose off halfway through a conversation or that at times I was close to falling out of my very attractive hospital gown. She didn't even mind me talking about toilet humour! Laughter is of course the best medicine and this comes from having the best people around you during recovery. 

Phew! A much more normal colour!

24th March

So it's the 24th March. Today marks one year since I received the phone call from the Royal Free Hospital to let me know that I was being placed on the transplant list.

It was mid afternoon at the office when the phone rang. I knew immediately what it was and yet nothing could prepare me for the emotions that swept over me. Having waited an extra 2 weeks after my assessment, I was on tenter hooks wondering whether or not they would be listing me or not. When the Transplant Co-Ordinator gave me the news, there was nothing I could do to stop the tears of relief. I was then standing in the area of the office where the lifts are, in a kind of no-man's land, tears streaming down my face with no idea how I was going to be able to get back to work. My HR manager saw me and I was able to tell her the news. She sent me outside to cool down and have a chance to breathe.

So there it was, the decision had been made. All I had to do was wait for the phone to ring!

This past 12 months has been a torrent of emotions. Waiting for a phone to ring has never been so hard. Receiving a false alarm call in which hopes were lifted and then crashed leaving myself and my family left by a hospital bed in London being told to make our way home. Coming home from that first call was truly heartbreaking but at the same time it was a reminder that I was being thought about for transplant at each opportunity meaning that any day now could be the next call. Just 6 weeks later, that second call came. I didn't believe that the surgery would go ahead. Even when I was prepped for surgery and had been given a dose of temazepam to calm the nerves, I still believed that I was going to be sent home. I couldn't believe it when, just 8 hours after the call, I was outside the theatre waiting for the staff changeover so I could go in for the transplant that, by that point, was so very needed.

Here I am, 12 months after that listing phone call, well on the road to recovery and planning the rest of my life!

If anyone has any suggestions for exciting things to do or places to see in my healthy future, please feel free to message me or leave a comment!

Keep Smiling and Happy Easter :) 

A Methylprednisolone Adventure...

Right, let's get back to business!

It's one week post transplant and I have just been informed that it is likely that I have rejection and will be spending the next 3 days on very high dose 'mega roids'... I have been warned by the consultant that I am in for a rocky night. 

It started horribly. I felt a catch in my throat and started coughing uncontrollably. I have never felt so panicked and in so much pain. I genuinely felt as though my wound was going to open up and my insides would come spilling out. There was no need for the call bell. It was immediately obvious to the nurses on duty that I was in distress and they were at my side swiftly. The lovely Irena stayed and held my hand to comfort me whilst another nurse rushed to get some oramorph. Once the coughing and pain had settled, I apologised profusely to the other patients on the ward for making such a fuss and waking everyone.

As warned, getting to sleep was proving difficult and the combination of all the meds was starting to mess with my head... And so the craziness begins...

Some part of my brain decided that the best thing to do to try to sleep would be to sing some lullabies. As a child, my mum would often sit on the landing outside mine and my brothers bedrooms and sing us to sleep. In my drug addled state, I believed that if I was struggling to sleep, everyone else must also be having difficulty so I should follow my Mumma's lead and sing. I went through the folk songs mum used to sing and found that I could only properly remember one, a beautiful lullaby called 'John of Dreams'. Once I'd stopped being able to remember that one, I moved onto musicals and worked my way through 'Hushabye Mountain', 'Stay Awake' from Mary Poppins and 'feed the Birds'. I'm not sure how that last one counts as a lullaby but I'll blame the drugs! Something switched and I realised that actually, I might be keeping the other patients awake and I wasn't  succeeding in singing myself to sleep. Thankfully, I managed to doze off briefly. 

At around 4am, I was woken for blood tests. This is when the fun really started...

Once more, I was struggling to get to sleep. I popped my iPod on with 'Pure Chillout' and closed my eyes in the hope that the music would help me to drift off. I started tapping my feet in time to the music. Then I waved them from side to side. I found that as I waved my feet, my bed began to move. I then found that I was able to steer my bed using my feet and so off I went on a little adventure.

I drove myself to the hospital lift and then down to the exit. I headed towards Belsize Park tube station, down the hill, past the lovely little boulangerie which smelled delicious as it was morning and just opening... Mmmm croissants! Into the tube station I went (still in the bed), through the barriers and down in the lift to the platform. I happily steered the bed onto the train with no stranger looks and people behaving as though this was an everyday occurrence. I knew exactly where I was heading and got off at Holloway Road. Left out of the station and across the road, I was in my favourite shop, Vivien  of Holloway. Caius had arranged a private appointment. It was just me in the shop, lying in my hospital bed surrounded by wonderfully helpful (as always) Vivien of Holloway staff. They had been instructed that I could have any outfit of my choice but that I wouldn't be able to try anything on because of my condition. The lovely ladies spent ages picking up dresses and flourishing them in front of me so I could choose. I was in heaven! It then transpired that I was there to choose myself an engagement outfit! I don't remember making a choice but I left the shop with a goofy grin on my face and steered myself back to the hospital...

I woke feeling euphoric until I realised that I wasn't engaged and didn't have a new Vivien outfit, nor was I likely to be wearing any of my Vivien clothes for some time... I drifted off again and experienced a very odd hallucination...

I was at a friends house in Modbury where my cousin Richard and his fiancé, Alice, were showing off their new gold glug jug. They were saying how much better it was than Gill and Rob's one because it was gold. They were very proud of their gold glug jug. I then found myself discussing glug jugs with mum and saying how much I'd always wanted one. She told me that she had my Grandad's glug jug and that I could have it. At this point, she presented me with a ceramic tray...

The conclusion from these strange, slightly out of body experiences, is that I think I'm just a little bit odd!

Keep Smiling :)

Gotta catch 'em all!!

I had intended to give a chronological account of my experiences but having got a bit behind, so much has happened in between that needs to be said! Don't worry, I will go back to the time in the Royal Free.

Today I had a bit of a tricky day. 

It didn't get tricky until mid-afternoon. I left for my rheumatology appointment shortly after 2pm giving myself plenty of time to get there. Traffic was a nightmare and so I was star gin to worry about being late. I made it to the rheumatology department in the nick of time but started to feel the tell-tale signs of dropping blood sugars - hot and shaky. Thankfully I had my emergency Haribo in my bag. Once checked in, I sat and waited. I was called to be weighed and fell apart. I was in quite a lot of pain in my left hip which has been playing up for some time leaving me able to walk about for around half an hour before causing trouble which then doesn't settle for the rest of the day. I hobbled down to the scales and cried. The nurse was so lovely. She sat me down in a quiet corner and I explained that I was feeling shaky and as though my sugars were low. She had them checked and confirmed that whilst I was above hypo measurements, it was low and it would be a good idea for me to get something in me. She sorted out with water, a cup of tea and a couple of biscuits- just what I needed after the quick fix of the Haribo. 

I sat in the quiet until the consultant called me in at 4pm, an hour after my appointment time. The consultant went over changes in meds since my last appointment and did an examination of my joints. The ones that came out as most painful were hips, knees, ankles and wrists. There was also pain in around half of my toes... Sitting back down, he broke the news that I had some sort of inflammatory arthritis. This was both a shock and a relief. A relief that actually I haven't been imagining these joint pains and that they can be attributed to something. A shock as I really hadn't expected anything to have shown up. The diagnosis came from the examination as well as blood results from my last visit. 

The next step is to start treatment for inflammatory arthritis and to determine which form of arthritis it is. The relevant tests have all been requested so I get to look forward to more blood tests, more x-rays and more ultrasounds!

I would like to reiterate how wonderful the nurses were. I felt pretty silly allowing my blood sugars to drop to the point where I got myself quite so worked up but they looked after me so well and kept a very good watch on me to make sure I really was improved enough to get myself back home.

So, it would appear that my immune system needs to chill out and stop playing Pokemon and trying to collect all these auto-immune conditions! Fingers crossed the treatment plan is given the go ahead by the liver team and that they can work alongside one another.

Keep Smiling :) 

The Biopsy

I have been a member of a few Auto-Immune Hepatitis (AIH) support groups for quite a while. These are fantastic networks that provide great support for patients with AIH and there are loads out there for various different conditions. 

Most patients with AIH will have had a liver biopsy at some point. Primarily because they are one of the most accurate diagnostic procedures for AIH. I have had a few since I was diagnosed to measure the level of damage to my liver over the years. Once my liver was confirmed as cirrhotic, there were no more biopsies as there was essentially no point in having them done. The damage to the liver was beyond repair and whilst the treatment was most probably slowing down any damage, it was unlikely to improve. These biopsies were all undergone the traditional way, i.e a sample of the liver was taken by entering through the rib-cage. This is most often carried out under sedation with local anaesthetic and involves a needle being inserted into the liver to take a sample of the tissue. On the whole, it is a relatively painless procedure however, as with all types of procedure, there can be complications. One that I once experienced was having a nerve caught by the needle which caused considerable pain in my shoulder known as referred pain. 

The biopsy that I was to have after my transplant is known as a transjugular biopsy. In this procedure, a tiny biopsy needle is inserted into a vein in the neck and using ultra sound as a guide, is threaded down the vein and into the large vein in the liver, the hepatic vein. From there, a sample of the liver is taken as in the regular biopsy. This is repeated 3-4 times until enough useable samples have been gathered. 

I was terrified. Unfortunately I had read a few horror stories of these biopsies through the support groups and had got myself really worked up about it. When I was told I wouldn't be able to have sedation, I began to get quite upset. I didn't have any family with me at this point to hold hands with or to be strong in front of or cry in front of. So I cried anyway. 

The team were incredibly reassuring and reminded me of the importance of having the biopsy done and getting the results back quickly. I dried my tears and went in, even managing a few jokes here and there.

As the team were preparing for the biopsy, I heard mention of my platelet count. Apparently it was 90. I was in shock and thought I must have misheard them. Pre-transplant, my platelets ran at around 20-25 so at hearing 90, I figured they must have said 19 but was reassured otherwise. I was slid from my bed onto the biopsy table. I then had a sort of tent attached to my neck which covered my face but didn't touch it. This meant I wasn't able to see what was going on - definitely a good thing!

Where the 'tent' was attached to my neck, there was a small area through which the procedure would take place. I was then given an anaesthetic injection into the vein that would numb the area and the vein itself. Once that had set to work, the procedure could begin. I felt a pressing sensation on my neck that was a little bit uncomfortable. I then felt the strangeness of the biopsy needle moving through the vein. Finally, there was a click and again, a small sensation of pressure on the liver and the needle was removed. This was repeated another few times so that they could ensure that there were enough samples of good enough quality to assess. A small stitch was used to close the entry area and I was ready to go on my way.

The whole thing took less than 20 minutes and I was back on the ward with a small square plaster covering the biopsy area. I was advised to stay flat in bed for the next 4 hours to prevent any bleeding from the biopsy area.

Overall, the experience was nowhere near as horrific as I had expected. In fact, it was mont bad at all. I wouldn't say it was something I enjoyed or that I would like to have done on a regular basis, but I was prepared for an awful lot worse. 

I hope that this account puts some people at ease.

The tiny steri-strips that can just about be seen on my neck are where the biopsy went in and this is the only sign that it took place.

If anyone would like to ask me any questions about this procedure, please don't hesitate to ask and I will do my best to answer.

For further information about liver biopsies, please take a look at the following links:

British Liver Trust: Other Diagnostic Procedures

Guys and St Thomas's Guide to Liver Biopsies

Keep Smiling :)

And it was all Yellow...

Wednesday 4th November. I woke up feeling rough. Not rough like sniffly, stuffy nose rough; rough like I couldn't move.

The lovely physios came round to see me quite early and I said that I really didn't feel like getting out of bed and that I had probably overdone it the day before by spending most of the day sitting out of bed and walking around. From my experience of these physios, they usually do quite a bit of encouragement to try and get patients out of bed, particularly if they've already shown signs of being quite mobile. On this occasion though, they were quick to agree and said they would drop by later in the day to see how I was getting on. I was completely and utterly zonked. The doctors came round as usual and took bloods. I managed to sit up a bit and watch something on my iPad but I think i kept drifting off. 

At some point during the morning, the doctors started taking about a biopsy and trying to fit me in that day. To my knowledge, it wasn't unusual for a biopsy to be requested. I started to hear mutterings of slight concern. My bloods results were doing well on the whole but my bilirubin had taken a large spike which was a bit unusual as usually all of the liver function tests go awry if there's a problem. 

At one point the student nurse came round to see me. She was a great laugh- she seemed a little bit scatty and was always very talkative. She came round and dropped a bit of a bombshell. There had been a lot of fussing up to this point but I though this was completely normal until she told me that everyone was really worried about me. She then told me that I was looking very yellow... I hadn't been up to moving around so hadn't even seen myself in the mirror up to this point. Then I panicked. I took a picture of my eye to see how yellow I was and it wasn't a great result.

I've seen worse but a week after transplant, I was certainly hoping for much better than that!

I can't quite remember what order the rest of the day happened in. I know I reluctantly had some lunch. After lunch, I had visitors. The wonderful Sarah who I haven't seen for years but went to university with came to say hi. We had a really lovely catch up but the poor girl spent most of the time crying. I think this happened before I'd taken the photo of my eye as I didn't realise myself how bad I looked. Caius was being careful not to overload me with people and had a coffee with Abi whilst Sarah was with me. Once Sarah had gone to work, Abi and Caius came up and I decided to show off by walking myself to the toilet and back. As I came back, one of my drain bags must have overfilled and it leaked all down my leg, soaking my gown and leaving a very embarrassing puddle on the floor. I felt completely humiliated and burst into tears. I was exhausted from just a short walk and was now covered in nasty drain fluid and standing in the middle of the ward. Thankfully, the lovely nurses were on hand to clean me up and get me back into bed and Caius and Abi were good enough to have a little wander whilst I was being cleaned up.

They got back and I enjoyed more catching up. Abi had travelled from York to London to come and visit and had arranged to stay for a night at her parents so she could check up on me again.

I also had a visit from the delightful little Katie who will always and forever be, little Katie. She's like a little sister to me and I have watched her grow from the girl who stood on tables in cafes to sing to everyone, to a beautiful, confident young woman who is finding her place in the big city. 

I seem to remember that it was also on this day that I took my first look at my wound. The surgical team had been checking on it daily but I hadn't yet had the courage to take a look. Surrounded by friends, I decided it was time! It was a shock but i was also fascinated by it. I had been stapled up so there was something very Frankenstein-y about it. Looking at it, I couldn't quite believe that it was the same body from a week before.

The bruising across my lower abdomen had been there for some time and was caused by my insulin injections. The round thing on either side were my drain bags. When major surgery takes place, a lot of fluid is put into the body and needs to come out somehow... in this picture, I have recently had fresh, clean bags attached.

I think it was after dinner that I was taken off for my biopsy. Having heard mutterings all day about it with some debate as to whether it would take place on this day or the next morning, everything then seemed to happen very quickly. I was taken off and prepped for the op and started to panic. I'm not good with needles or surgery and get quite anxious about procedures. I usually request sedation and did so at this point. They told me that because I had dated recently, I wouldn't be able to have sedation as it would be dangerous. I sobbed and begged and sobbed some more. One of the team came down to see me and told me how important it was for me to have the biopsy done as soon as possible. It was at this point that I realised the seriousness of the situation. The team were concerned that I was rejecting and would need to treat this as soon as they possibly could which meant finding out what was wrong as soon as possible. They had been working hard all day to find a slot for me and this was it, they really couldn't wait another day!

The biopsy didn't take long and I will try to write a detailed separate post about it.

Once back, I had my family around me and I could see there was concern. I was very jaundiced and definitely not as perky as I had been the day before. However, I still managed to smile and have some silly time...

Getting into the Christmas Spirit with the reindeer antlers from Mumma!

This probably shows the extent of the yellowing a little better... yes, I really was that shiny, kind of like a lemon really!

The docs came back later that day and although they didn't yet have the biopsy results, they were keen to treat me for rejection. This meant 3 high doses of IV steroid over 3 days with the first dose to be given that night. I was warned that I was in for a rough night. The steroids would most likely keep me awake, make me hyper-active and probably hungry. They weren't wrong...

Keep Smiling :) 

It's Getting Hot in Here...

The heat at times was unbearable... I think I had to be reminded a few times that stripping off was inappropriate! A number of times, the doctors would come round to examine me and want to but blankets over my legs which I was not impressed with. I had gone past the stage of wanting to retain my dignity and would happily have lifted up my gown and flashed the very attractive hospital nappy pants that I had to wear. In the end I gave in though.

Mum and Caius worked hard to try and keep me comfortable and bought in cool packs, mist sprays, cold flannels and even a couple of ice packs. The bed I was in was a special air bed designed for use in patients that aren't particularly mobile. One of the problems with it though, is that it retains heat making it very warm. By Tuesday 3rd November, I was more mobile and spending a reasonable amount of time sitting in my chair. The problem with the chair was that it was plastic and also very hot. Not only that, but the amount that I was sweating meant that I got completely stuck to the chair! I ended up trying to cover the chair in towels so that I could sit comfortably. The trouble with sitting was that it took a lot of energy, energy that I didn't quite have so ended up needing to get back into the boiling hot bed! I was in a perpetual state of being uncomfortably hot. If only hospitals were allowed to open windows - a bit of fresh air would have been an absolute godsend!

Chilling out with Dad. In my right hand is my PCA. The towel on my tummy was to help me cough- coughing was less painful when I pressed on a towel on my abdomen. This is a well used technique after abdominal surgery.

To add to the general heat of the ward and the bed, one of the side effects of fentanyl is sweating. After dosing myself up with fentanyl, I would break out in sweats but needed the pain relief! Again, a perpetual cycle of discomfort. 

The team were trying to bring the fentanyl dosage down but unfortunately I was still in quite considerable pain.

There was a light at the end of the tunnel... The ward I was on was a temporary arrangement whilst the actual ward was being refurbished. We were due to move to the proper ward the following week so I wouldn't have to put up with the heat for too much longer!